There’s a fast-growing disease with some serious side effects – if left unchecked – happening all over.
It’s called cyberchondria: a form of anxiety that comes from researching or relying too much on the Internet for medical information.
“For some people, it can just dominate their life and that’s when we have to deal with it in therapy,” said psychologist Molly Allen of River Park Psychology.
“You used to have to put a lot of effort into looking up medical information,” Allen said, noting only the most dedicated would go to a local library to look up health information in the days before the Internet. “Now it’s literally at our fingertips.”
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While 24/7 access to medical information can mean some people may work themselves into a frenzy about symptoms or delay going to a doctor, it also means patients can be better informed, have better discussions with their doctors and be better advocates for their health care or that of their loved ones, said Wichita family medicine physician Gretchen Dickson with WesleyCare Family Medicine Center.
“I think most doctors who you talk to will tell you they recognize the value of the Internet in educating patients,” Dickson said. “It’s a powerful tool. The downside is if (patients) are spending a lot of time worrying or looking up information on sites that are unreliable.”
For some people, like Wichita mom Kristin Lindner, finding information online can make a life-or-death difference.
Becoming an advocate
Lindner’s daughter, Hannah, was born with a rare form of dwarfism called campomelic dysplasia. It’s considered a life-threatening condition, and many doctors recommend terminating a pregnancy if diagnosed when the fetus is in vitro or have parents prepare for end-of-life care shortly after birth.
When Lindner received Hannah’s diagnosis at birth 14 years ago, she immediately researched the condition online. When she found a discussion group that included one survivor, she also found hope.
“I printed out her picture and took it to the NICU (neonatal intensive care unit) and pasted it on Hannah’s crib and told every nurse and every doctor ‘there is a survivor so we’re not going to give up on Hannah,’” Lindner recalled.
Since then, Lindner has relied on doing thorough online research to help her be Hannah’s advocate.
“The Internet has been my friend over the years,” she said. “Every procedure, every medication, every surgery that’s she’s had, I’ve looked it up.”
Most people do it
When the Pew Research Center did a study in 2012 on online health information, it found that most people – almost three of four Internet users – will go online to look up health information.
And it’s not just something patients do. Even medical professionals like Allen and Dickson have turned to the Internet when it comes to their personal health.
When Allen’s neurologist called her to tell her she had transverse myelitis, an inflammatory disease that affects the nerves of the spinal cord, she wrote down the diagnosis and immediately looked it up.
“And then I thought, ‘holy crap,’” as the first images that popped up were of people in wheelchairs. “I thought that would be me.”
While she found it useful to understand her condition, which is in a mild stage, Allen had to remind herself that overwhelming herself with too much information or reading about extreme cases was not helping.
When Dickson had surgery on her Achilles tendon, she found it practical to read how others who had the surgery had dealt with it.
A starting point
Dickson said she would rather have her patients tell her what information they are finding and where they found it online rather than shy away from telling her they’ve been doing online research.
“If you don’t know what they’re worried about, you can’t start a discussion about it,” Dickson said. She can assuage fears, discuss options and offer advice about how to find reliable information if patients talk to her about what they find online.
“I use FamilyDoctor.org a lot,” she said. “They have a lot of easy-to-read patient education information.” She also recommends checking out websites by reputable organizations such as the American Heart Association or the American Cancer Society.
Avoid the side effects
While arming oneself with information is good, Allen and Dickson agreed, people have to be aware of the side effects of online health research.
Personal blogs tell just one person’s perspective, for example. “Each patient is different,” reminded Dickson.
Delaying a doctor’s visit because you’ve self-diagnosed your condition is also never good, they said.
The best prescription when doing online health research, reminded Dickson, is to visit reliable medical sites and then visit with your doctor about any symptoms that give you concern.
Tips for online health research
▪ Don’t be fooled by the name of a site. Just because it has health or medicine in the URL doesn’t necessarily mean it’s authoritative.
▪ Don’t rely solely on online discussion boards or personal blogs. Every patient is different and you’re getting just one perspective.
▪ Remember, not all studies are created equally. Some studies may involve too few people to make broad generalizations, research methods may vary, and in some rare cases, information is falsified.
▪ Reliable sites tend to be those that are run by highly respectable organizations whose mission is doing research and providing education, such as the Centers for Disease Control and Prevention, the National Institutes of Health, professional medical organizations and well-known nonprofits such as the American Heart Association or American Cancer Society.
▪ Don’t self-diagnose. “I would never substitute (an Internet search) with a visit to my health care provider,” said Gina Berg from the University of Kansas School of Medicine-Wichita.
▪ Share the information that you find with your doctor to help start discussions.
Sources: Gina Berg, KU School of Medicine-Wichita and Wesley Medical Center; Gretchen Dickson, WesleyCare Family Medicine Centers; Molly Allen, River Park Psychology
From a nagging pain to a condition we can’t pronounce, most of us have looked up symptoms and treatment options. Some people even joke that they consult “Dr. Google” for their ailments.
But not all the information you find online is reliable or complete, cautioned one researcher.
Gina Berg, a research assistant professor at the University of Kansas School of Medicine-Wichita and director of trauma research and the Wesley Leadership Institute at Wesley Medical Center, co-authored a study a couple of years ago about the thoroughness of information that could be found online about concussions.
Berg and her co-researchers – three Wesley Medical Center physicians and physician assistant students at Wichita State University – got 18 million hits when they Googled concussions. Since most people don’t scroll much past the first 10 sites listed, the researchers analyzed those first 10 to determine which offered the most complete information.
The most concerning was that sites with authoritative-sounding names, like emedicinehealth.com or medicinenet.com, popped up pretty high on the search engine, however, the doctors in the study couldn’t recommend them because they didn’t provide good enough or complete information, Berg noted.
The No. 1 site for concussion information, the researchers found, was one that came up seventh in the search. It was the Centers for Disease Control and Prevention website. The second best was Wikipedia.
If you do an online search for health information – and nearly three out of four Internet users do, according to the Pew Research Center – keep in mind that not all sites are good, even if they appear in the top 10 list of a search engine, Berg cautioned.